Doctors hovered over Jenetha Piecz with worried expressions and hushed voices as she lay in an emergency room bed. Her blood pressure had spiked dangerously high. The nurses, she recalled, were told not to sit her up for fear of triggering a stroke.

This had become the cycle of her life: Frequent trips to the emergency room and hospital stays for blood pressure boosted by high dosages of the steroid prednisone, prescribed to help fight bouts of diarrhea, vomiting, severe dehydration, spasms and nausea.

“I was like a plane going down,” she says.

Life had been so different before. She had been an energetic young woman who dreamed of making a living working with horses. As a girl, she would ride her bike to the fields surrounding her home in Toledo, Ohio, to play among the penned horses. She even fancied becoming one of them. Sharing this dream with her elementary school friends earned her the proud nickname “Horsey.”

But severe and mysterious digestive problems, and then the side effects of treatment and years of extraordinary financial costs of drugs, doctors and hospitals, seemed to dash her chances of fulfilling any aspirations for the future.

Jenetha doesn’t know exactly when symptoms of her illness first set in, but she does remember noticing, as a teen, that she had to go to the bathroom more than her friends.

She was reminded time and again during her 20s that something just wasn’t right with her body. Upset stomachs, frequent bathroom breaks and occasional diarrhea punctuated a life immersed in physical activity: biking, running, weight training.

When she was 30 she married Tony, who she calls the love of her life, and before long she was pregnant. Six weeks after giving birth to a healthy son, Sam, the bottom dropped out.

“All of a sudden, after dinner, I would drop to the floor and curl into a fetal position,” she recalls. “It felt like a knife was being jammed into my stomach. Every time I ate, it hurt. It got to the point where I hated to eat.”

Months later she was pregnant again. But the child, Jack, was stillborn. In addition to dealing with the grief of losing a baby, her abdominal pains returned with a vengeance, along with severe dehydration, diarrhea and vomiting.

“I just wanted to die,” she remembers.

Naming her enemy

Her gastroenterologist at the time diagnosed the symptoms as irritable bowel syndrome and prescribed steroids. The drugs helped control the pain and digestive problems, but also led to a cycle of hospitalizations.

One of those episodes proved pivotal.

The morning after she was stabilized, gastroenterologist Dr. Larry Kosinski visited her room as he made his rounds. He studied her chart, felt her stomach and conducted other tests. He complimented Jenetha on her green toenail polish, and then he asked her to tell him about her illness.

She told him about the long line of troubles, including the health issues she encountered after Sam was born and after the stillbirth of Jack, the high dosages of prednisone for the extreme symptoms and the endless string of expensive hospital visits.

You have to constantly balance the scales.

Jenetha told Dr. Kosinski that, although she is naturally an active person, she believed the high doses of prednisone triggered hyperactivity and a voracious appetite. At the same time, she lost a lot of weight, dropping to 116 pounds at one point. She also needed medication to sleep.

The steroid also seemed to be affecting her mental stability, she told him. “It was very hard on my relationships. I was like a demon.”

When she finished telling her story to Dr. Kosinski, Jenetha sensed she was about to get an answer to the nagging question: ‘What’s making me ill?’

Dr. Kosinski’s diagnosis? Crohn’s disease.

Finding the right path to health

Crohn’s is a chronic disease that affects an estimated 700,000 Americans. It causes inflammation of part, or all, of the digestive tract. It’s list of symptoms reads like Jenetha’s diary: mild to severe cases of diarrhea, vomiting, abdominal pain, weight loss, fever and fatigue.

Naming her medical adversary reassured Jenetha and gave her hope that she would not live her life in perpetual pain.

But reclaiming her health still wasn’t fast, and it wasn’t easy. What happened next revealed how important it was to get care from a medical group and physician who could carefully monitor and manage her chronic condition.

Dr. Kosinski began Jenetha’s treatment with a class of medications called mesalamines—drugs that stop the body from producing substances that cause swelling in the digestive tract. He followed the mesalamines with a drug called Azathioprine that suppresses the body’s immune response. But neither controlled the inflammation.

Her newfound hope fell to familiar despair. One day, she called the doctor in pain: “I really don’t want to live like this,” she sobbed, pleading for help. “I don’t want to live anymore.”

But there was a new medication, called Remicade, that Kosinski thought could help with Jenetha’s struggle with Crohn’s.

Remicade is designed to suppress the inflammation triggered by Crohn’s disease and other chronic inflammatory disorders. It does this by blocking a protein that causes the immune system in Crohn’s patients to attack healthy cells in the digestive tract.

Jenetha would need four infusions (meaning it’s given intravenously) every year, indefinitely, to help control her condition. Her first infusion did not go well.

“I ended up just feeling sicker than I did before taking Remicade,” she says.

She continued to lose weight. She later joked that she could take off her pants and put them back on again without loosening her belt.

As with many chronic diseases, Crohn’s punished her family nearly as much as it did her. Perhaps the hardest hit was her then-3-year-old son, Sam. Often confined to bed and unable to attend to Sam, Jenetha taught the toddler to pull a chair over to the microwave, open the fridge, get a hot dog, pierce it and cook it for his lunch.

“There was no padding in his life,” Jenetha says.

A fellow gastroenterologist in Dr. Kosinski’s medical group was familiar with Jenetha’s case and had experience with Remicade. He suggested that Dr. Kosinski infuse the drug more slowly and add the antihistamine Benadryl.

The new combination worked.

Getting back to life

Jenetha’s life returned to normal. She could take care of her family and go to the grocery store or library without having to plan strategic bathroom breaks. She could put Sam in the bike seat and take leisurely rides along neighborhood streets.

She even began running half-marathons, including a race for the Crohn’s & Colitis Foundation.

Returning to health also meant Jenetha could be at the horse barn at 4:30 a.m. to ride in a nearby state park at daybreak. She would ride about eight miles, stable the horse and be home by 7 a.m. “to take over being a mom.”

She started her own business teaching beginners the art of riding and caring for the animals. She would place Sam in his baby stroller in the middle of the arena while she led a horse around the perimeter with a child rider.

In 1999, she gave birth to her daughter, Maggie.

At what cost?

Medical bills forced the Piecz family to shuffle payments and finances to keep creditors at bay, even though Jenetha was covered by Blue Cross and Blue Shield of Illinois through her husband’s job. To make ends meet, Tony had even taken on a part-time job. As she got back on her feet, her husband was able to quit his part-time work while she reclaimed the life of an outgoing, energetic mother, wife and businesswoman.

While welcome, her return to health comes at a price – each infusion costs thousands of dollars.

In 2016, for example, Jenetha’s doctor visits and Remicade infusions accounted for about $21,000 in billings in a single year.

Last fall she began receiving injections of another expensive specialty drug, Prolia, for her constant joint pain caused by osteoporosis, a bone weakness, which she attributes to the high-dose steroid therapy early in her medical journey.

The Blue Cross and Blue Shield of Illinois plan that covers Jenetha through her husband’s job pays 80 percent of the medical costs. That leaves the family with a $1,500 deductible, and 20 percent of medical costs. But the plan also caps how much the family pays each year (aside from premiums) at $4,500. That cap is critical when dealing with the expenses of a serious, chronic illness like Crohn’s.

Dr. Kosinski’s group partnered with BCBSIL in 2012 to study medical claims for Crohn’s patients. The study found that more than half the costs prior to the new specialty drug were for hospital care. Although Remicade and similar drugs are very expensive, they nearly eliminate the need for ER visits and hospitalizations.

“There are tangible and intangible costs,” Dr. Kosinski adds. “How do you put a value on a ruined marriage, about not being able to keep a job, not be able to drive on the expressway for 40 minutes without stopping for a bathroom? These costs have to be considered, too, when it comes to expenditures for health care.”

Jenetha sympathizes with anyone without insurance. Her mind is occasionally troubled with thoughts about what would happen if her condition were to “fall apart” again. Both drugs she takes suppress her body’s immune system, which could present problems if she ever needed surgery, for example.

“When you’re gravely ill, you don’t think about the costs associated with getting well,” she says. “But the bills come due. I feel so sorry for those who have to go through a similar journey without insurance. You just have to count your blessings every day. You have to constantly balance the scales. Health is everything.”

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